Charting Your Life CourseMichelle “Sheli’ Reynolds, SIB, PhD

Snohomish County, WA

April 21, 2015

About me…

• Sibling of three brothers, one who is 32 year old with developmental disability

• Director of Individual Advocacy and Family Support, UMKC UCEDD

o Supported the Self-Advocacy Movement for 12 years

o Director of Mo Family-to-Family Health Info Center

o Co-Director of National CoPon Supports to Families

About My OrganizationHoused at UCEDD/LEND with longstanding focus on Family Support, Self-Advocacy and Self-Determination

State and National Systems and Policy Change

Statewide Family Resource Center for over 25 years with evolving and on-going statewide partnership

Project Goal

To build capacity through a community of practice across and within States to create

policies, practices and systems to better assist and support families than include a

member with I/DD across the lifespan.

Project Outcome

• State and national consensus on a national framework and agenda for improving

support for families with members with I/DD.

• Enhanced national and state policies, practices, and sustainable systems that result

in improved supports to families.

• Enhanced capacity of states to replicate and sustain exemplary practices to

support families and systems.

DCCT MO TNWA

OK

Funded by

National Partners

Table Introductions

Introduce yourself to tablemates

Share a few sentences describing your first job

Outcomes for Today

DISCOVERY &

NAVIGATION

Knowledge& Skills

CONNECTING &

NETWORKING

MentalHealth

& Self-Efficacy

INTEGRATED SUPPORTS

& SERVICES

Day-to-Day &

Caregiving/Supports

• Learn about and apply the LifeCourseframework and tools to assist with Discovery and Navigation for information and planning

• Connect and Network with others who are on a similar journey through interactive activities and discussions

• Identify Integrated Supports strategies for enhancing the trajectory towards a good life

What is YOUR Vision for a Good LIFE?

Vision of What

I Want for a Quality of Life

Write down your responses on your worksheet & discuss with your table

What DON’T you want for your Focus Person??

Vision of What

I Don’t Want

Write down your responses on your worksheet & discuss with your table

How the Story Began: Shaylee

• Fetal Alcohol Syndrome

• PTSD/Seizures/Learning

Delays

• Autism/ADHD/ODD

• Expectancy of

Institutionalization

• Foster/Adoptive care

Shaping the Rest of the Story: Shaylee

Watch us, it won’t happen!

What We DON’T Want

What We Want

Bleak

prediction

of future

Dismissed Psychiatrist

Home School

Strive for “normalcy”

Moved to

Farmstead

Joined 4-H

Began

teaching

self-

advocacy

• Live independently

• Work with animals

• Healthy self care

• Self-regulate behaviors

• Control over finances

• Access to transportation

• Strong supports in

place as needed

• Over-medicated

• Taken advantage of

• Institution or group home

• Others make all decisions

choices for her.

Blatant

disapproval

of family

choices

SHAYLEE’S

ID tag/jewelry

Cell phone alarm

clock microwave

Timer

computer kindle

or I-pad daily

schedule

curious, sense of humor,

friendly, loyal, ability to

focus, organized, stands

firm in her beliefs,

compassionate

Family, Support group

families, neighbors, 4-

H club members,

Advocates, Librarian,

Pastor, Sunday School

Teacher and Youth

Leaders, Pharmacist,

Doctor and Nursing

staff, Homeschool

families, bowling

league members and

owners of the lane.

Church/Sunday School/Youth

Group, Parks and Recreation,

YMCA, Bank, Library, Grocery

Store, Pharmacy, Doctor Office,

Taxi, Bus or Oats Transportation,

Support and Advocate

Organizations, Homeschool

Support Groups

service coordinators,

insurance coverage,

diagnosis and testing, age,

location, living

arrangements, therapies,

income/SSI benefits or other

financial aid, doctors,

nursing, and specialists

working as a team WITH her

Mapping

Shaylee’s

Good Life

Why is this important Now?

1 in 5 Americans with Disability

9.4 million individuals have difficulties with activities of daily living (eating, bathing, dressing)

5 million required assistance

15.5 million individuals have difficulties with instrumental activities of daily living (housework, phone, meal preparation)

12 million required assistance

(Americans with Disabilities 2010, U.S. Census Bureau)

What we know about current realities?

Expectations, Values, Culture

Capacity of Work Force

Federal Budget

Demand for Services

Community

Family

Social Services

Person with Disability

Services and Supports are Evolving

Baby-Boom Generation

National Institute on Aging

Shortage of Caregivers A labor shortage is worsening in one of the nation's fastest-growing occupations—takingcare of the elderly and disabled-just as baby boomers head into old age.

Wall Street Journal April 15. 2013

15,000,000

30,000,000

45,000,000

60,000,000

75,000,000

2000 2005 2010 2015 2020 2025 2030

Source: U.S. Census Bureau, Populat ion Division, Interim State Populat ion Project ions, 2005

Females aged 25-44 Individuals 65 and older

Larson, Edelstein, 2006

Recognizing Families Role in LTSS

528,00013%

672,00012%

3,500,00075%

ReceivingServicesOutofHome13%

ReceivingServicesLivingatHome12%

NotReceivingServices-LivingatHome75%

4.7MillionpeoplewithI/DD

Larson, S. A., Lakin, K. C., Anderson, L., Kwak, N., Lee, J. H., & Anderson, D. (2000).

89% of People I/DD are Supported

Outside of Formal Residential Supports

Joining Forces for a New Vision

1950s Mom------------Parent-----Family Movement

1970s Self-Advocacy and Independent Living Movements (Not about me, without me)

2000s Siblings Movement

1970s Rehab Act: 504 Plans

1975s Education for All Children

1990s IDEA and ADA

1960s Medicaid and Medicare Established

1980s Medicaid Waiver (Community Supports)

2010s Affordable Care Act

Community

Family

Person with Disability

2000’s Community

and Society

GUIDING PRINCIPLES FOR THE FAMILY LIFECOURSE FRAMEWORK

Reframing the Conversation at All Levels

People with disabilities and

their families have the right

to live, love, work, play

and pursue their life

aspirations just as others

do in their community.

Focus on “ALL”ALL individuals and their families are considered in our values and vision.

(Family is defined by the Individual)

100%

Focus on “ALL”

100%

All 4.9 Million people with

developmental disabilities

** Based on national definition of developmental disability with a prevalence rate of 1.49%

75%

National %

Receiving

State DD

Services

25%

Snohomish County with I/DD

23%

63%

Enrolled State

DD Services

No Paid Service

Case load

14%

Based on 1.58% prevalence of 745,913 citizens, US Census

No paid service case load- 1,651

Enrolled in services, 2,726 paid DDA service

11,785 estimated Person with Developmental Disabilities

All individuals live within the context of a family

Family is defined by the person and

Incudes members regardless of where they live

Lifelong Impact of Family on Individual

Biologically: Likes, dislikes,

skills, abilities

Policy:

Dreams, Aspirations,

House rules, cultural rules,

expectations

Environmentally:

Neighborhood, socio-economic,

education

Socially: Family and friend

network, connection with

community members

Family Life Cycle

Recognition of Individual and Family Cycles

Individual Life Cycle

Reciprocal Roles of ALL Family Members

Caring About

Affection & Self-Esteem

Repository of knowledge

Lifetime commitment

Caring For

Provider of day-to-day care

Material/Financial

Facilitator of inclusion and

membership

Advocate for support

*Adapted from Bigby & Fyffe (2012), Dally (1988), Turnbull et all (2011)

*Borrowed with Permission from Sibling Leadership Network

“Good Life for All ”

The Individual will achieve self-determination,

interdependence, productivity, integration, and

inclusion in all facets of community life

Families will be supported in ways that maximize

their capacity, strengths, and unique abilities to

best nurture, love, and support all individual

members to achieve their goals

Trajectory towards Good Life

Friends, family,

self-determination,

community living,

social capital and

economic sufficiency

Vision of What I Don’t Want

Focusing on Life Experiences

Birth-----Early Child----School----Transition---Adulthood-------Aging

“Anticipatory Guidance for Life Experiences”

“Chores and allowance”

“Birthday parties with friends”Learning to say “no”

“Playing sports or an instrument”

“Volunteering at church” “Making mistakes”

Think Across Life Stages and Generations

Age 0-5 6-18 19-64 65

WA Total Population

446,319 (6.4%)

1,150,667(16.5%)

4,428,326 (63.5%)

948,428(13.6%)

DD WA(1.58%)

7,096 18,295 70,410 15,080

Snohomish County

47,026 (6.3%)

127,642(17.1%)

484,443(64.9%)

87,334(11.7%)

DD Sno.(1.58%)

747 2,029 7,702 1,388

Applying the Life Stage and Life Experience Concept

Michelle Reynolds, Ph.D. reynoldsmc@umkc.edu February 2014

TRAJECTORY WORKSHEET

VISION for the Life I WANT

Love and happiness

Friends

Having a purpose/feeling valued

Involvement in the community

Healthy-good health

Family

Success-successful relationships

Jobs

Hobbies

Stability

Safety (relationships)

To feel safe: safe environment, with people

Choice

Independence

Feeling valued

Financial security

Home

Access to needs

Transportation-for all

What I DON’T Want

Only one option

Boredom

Poor health

No control

Poverty

Loneliness

Crisis

Hopelessness

Abuse

Sadness

Lack of acceptance

Isolation

0-5 years Multiple Environments (family,daycare, church) Socialization Learning Early intervention Access to health care

6-12 years What do you want to do/be? Manners Social skills Electronics Learning responsibility Learning independence Exposed to world Expectations Communication

13-18 years Problem solving Mistakes/risks Consequences Value of choices Value of money Recognize Strengths/ Weaknesses Aware of others Self-awareness Learning to fill out applications Setting goals Having experiences Accepting limits

Daily Life & Employment

Facilitator: Mary Katherine Long Monitor: Carla McCarrell-Williams

What did you do during that life stage?

What are you or others in that life stage doing?

Thinking Across all Life Domains

Daily Life and Employment(education/employment, life skills)

Community Living(housing, transportation,

community access)

Social and Spirituality(friends, relationships and

leisure activities)

Healthy Living(medical, behavioral and

mental health, wellness,

nutrition)

Safety and Security(emergencies, legal, well-

being, guardianship and

alternatives

Citizenship and Advocacy(leadership, peer support,

making choices, setting goals)

Understanding Possibilities for Individuals with I/DD

Through the Lens of My Life

Eric’s

Good

Life

Vision for the Future

Innovative

• Not Yet Discovered

Islands of Excellence

• Own home

• Shared Living Space

• Co-op

• Environmental Adaptations

• Independent Supported Living

Traditional Options

• Training Centers

• Intermediate Care

• Group Homes

Community Living Possibilities

Vision for the Future

Innovative

• A new possibility

Islands of Excellence

• Remote Monitoring

• Assistive Technology

• Time banks

• Human-service coops

• Self-directed Services

• Respite

• Micro-boards

• Companion Model

Charted

• Staff hired by Provider

Service & Support Possibilities

Vision for the Future

Innovative

• New possibilities, needs discovery

Islands of Excellence

• Micro-enterprise

• College/Tech Schools

• Career

• Military

• Supported Employment

• Volunteerism

• AmeriCorps/VISTA

Charted

• Sheltered Workshops

• Day Habilitation

Daily Life/ Employment Possibilities

The road is not always easy…..

What do Persons with Disabilities and Their Families Need to Support their GOOD LIFE?

Three Types of Supports

Elizabeth’s Health TrajectoryAs Told by Her Mother

5 Months…………….1 year…………………2 years

Charted trajectory stoma

Self determinationChoicePrivacy

VISION for a GOOD LIFE

Unnecessary medicationsUnnecessary proceduresLimiting choicesLimiting self-determination

What I DON’T Want

Assistance in Developing and Integrating Supports and Services

Person or family

resources, abilities,

strengths, characteristics

Family, friends, neighbors, co-

workers, community members,

church members

School, businesses,

Church/faith based,

public transportation,

Parks and recreation

Disability Services,

Special Education

Medicaid,

Housing,

Food Stamps,

Vocational rehab

(VR)

i-pad/smart phone apps,

remote monitoring,

cognitive accessibility,

adaptive equipment

Opportunities for Self-Advocates and Families to Engage, Lead, and Drive

their Own Supports and Impact Policy and Systems Change

Putting the Framework Together!!

Putting the Family Life Course Framework into Practice

How the Story Began: Izaac

• Achondroplasia

• Severe Sleep

Apnea/O2/Monitors

• Severe pneumonia/coded

• Multiple hospitalizations

• Trach/ventilator

• Delayed walking/talking

Shaping the Rest of the Story: Izaac

Changed hospitals –

Specialists

What We DON’T Want

What We Want

Misdiagnosis led

to negative

expectations

Educate/

inform in a

positive

manner

Tracheostomy

Total

life

support

• Self-

determination

• Participation in

activities he likes

• Learn medical

self-care

• People always

doing things for him

• Unnecessary

medications

• Unnecessary

procedures

Exposure

to

negative

comment/

questions

Community

involvement

Izaac’s

Kindle

Wii

X-box

You tube

Scooter

Vent/trach

Life Support

Equipment

Extremely outgoing,

funny, natural leader,

cute, thick-skinned,

nonchalant, Family,

neighbors,

school friends,

nurses, church,

cheer, tae

kwon do, dog

Athlete’s Plus Cheer

Tai Kwon Do

McAllister’s family night

Church

School

Service Coordination

Nursing

Adaptive Equipment

Medical Supplies

Insurance

Izaac’s

Integrated

Services and

Supports

Ben’s GOOD LIFE

Tools Used for Planning and Day-to-Day Supportsfor Self-Directed Waiver in Missouri

(Ben’s One Page Profile)

WHAT PEOPLE

LIKE & ADMIRE

ABOUT ME

· I like to make other people feel good and be happy.

· I have a great smile and a contagious laugh. I frequently “get the giggles”!

· I’m fun, silly and friendly!

· I am a dedicated volunteer in my community

· I am an Eagle Scout and an adult leader in scouting - been involved in service through scouting since first grade.

· I am a man about town!

· My tattoo!!

· My great hugs!

· I am willing to try new things…

· I remember songs and who sings them

· I am not usually a complainer, even though sometimes I am in pain or uncomfortable

I PITY THE FOOL WHO DOESN’T LIKE

·

WHAT’S IMPORTANT TO ME · My family and friends

· Volunteering at the Fire Station, wearing my uniform and badge

· Going to the library

· Going to church

· My TV, DVR, and radio/CD player (I like to play them all at once sometimes)

· My iPad

· WWE wrestling – I love when my brother Matt takes me to live shows

· Nascar Racing(Jeff Gordon is my favorite driver)

· Going to country music concerts

· Feeling like I belong

· Being like everybody else, not being treated differently

· Getting a tattoo (already planning my next tattoo)

· Having control over my life as much as possible

· My Excelsior Springs Tigers – especially football

· Riding horses at NTRC

· Facebook friends

· Having an occasional beer with friends

· Having a purpose and being productive

BEN‘s ONE PAGE PROFILE!

HOW BEST TO SUPPORT ME

· I need help remembering things, like what I did or who I saw today.

· I get confused easily so I need help not getting lost or turned around when I am out and about.

· I know what times I am supposed to take my meds, but I need help getting them out and getting refills.

· I get anxious sometimes, need to be reassured that people I care about will be there for me.

· I don’t like to spend time alone, but I am working on it, help me not be so anxious when I am alone for short periods of time.

· I sometimes need someone to steady me if I get off balance.

· I need to rest or extra support if I have to do a lot of walking or standing. If I am shopping, it helps if I am the cart-pusher.

· I need support keeping in touch with friends and family and practicing having good conversations.

· I’m friendly even though I may not look you in the eye at first

Ben’s Life Trajectory

Ben’s

I-pad, apps,

Facebook,

Facetime,

Digital watch,

Vibrating

toothbrush,

Glasses

Omni bus, Walmart,

24 Hour Fitness,

library, Price Chopper, Dr. T., St.

Ann’s church, ES Fire Dept, joint

bank account, direct deposit,

Power of attorney

Dad, Mom, Matt,

Zac, Ali, Chad,

Ericka, Sheli,

Firemen friends,

Ange, Pam, Wally,

Josh B., Matt S.,

Mike, Nick,

Scouting friends

PCA –DDD, self-

directed supports

Social Security,

Medicaid, Special

Needs Trust

Outgoing personality,

friendly, Eagle Scout,

can ride city bus

Ben’s

Integrated

Services and

Supports

Ben’s Integrated Week

Adapting, Accommodating and Integrating Supports:

Problem Solve Daily Routine

Morning Routine…………….Evening Routine

Eric’s Focus on Social and Spiritual

Happy, Funny and loving

Likes to help people

Likes to try new things

Police cars, tow trucks,

fire engines and racecars

Golf Cart

See his girlfriend more

Connect with his family

Spend more time with

friends

Scouts

Red Robin

Race Tracks

Companion

Supports

day-to-day

I-pad

Smart Phone

Adapting, Accommodating and Integrating Supports:

Specific Life Domain

Life Domains

Safety and Security:

Alternatives to

Guardianship

Case Scenarios for Applying LifeCourse Framework and Tools

Your Turn to Try!!!

1. Identify a note taker and then read the “case scenario” out loud to your table

2. On the Good Life Trajectory worksheet:

- Fill out what you believe is the persons Good Life and What Wouldn’t be a Good Life

- Star the persons age and list a few life experiences for that stage

3. Fill out the Integrated Star worksheet to assist the person to identify, develop or adapt the supports he/she needs to achieve the Good Life

Add the 3 scenerios

Applying the Framework to Transformational Change“Creating Space for innovation in Washington”

Peyton’s Integrated SchoolStory

Using the

LifeCourse Tools

to Transform the

Way the School

Thinks about

Peyton

Peyton’s Good “School” Life

Peyton’s Integrated Good Life

Change that is Needed

TRANSITIONAL CHANGE

“Retooling” the system and its practices to fit the new model

Mergers, consolidations, reorganizations, revising systematic payment structures,

creating new services, processes, systems and products to replace the traditional one

TRANSFORMATION CHANGE

Fundamental reordering of thinking, beliefs, culture, relationships, and behavior

Turns assumptions inside out and disrupts familiar rituals and structures

Rejects command and control relationships in favor of co-creative partnerships

Creating Blue Space, Hanns Meissner, 2013

ALL: Public Health Framework

Medical

System

Flu Shot

Hand Washing

Anti-Bacterial Soap

Developing Innovative Strategies for Transformation within and outside DD

Eligibility Based

Supports

-Family and Self-Advocacy Networks

-ADRC No Wrong Door Initiatives

-Inclusive education with supports

-Adaptive equipment

-Problem Solving and Life Navigation

-Universally designed and affordable homes

-Grocery carts for older kids

-EMT and Police knowledgeable and supportive

-Strong families and friends to share lives with

-Inclusive and accepting spiritual and recreational opportunities

Pediatrician, Families and Friends,

Faithbased

IDEA Part C, Parents as Teachers,

Health, Headstart

School, Special Education, Health,

Recreation

Vocational Rehab, Health Employment,

College, Military

Disability Services, Health, Housing,

College, Careers

Retirement, Aging System, Health

Vision for Integrated Systems & Communities for Good Lives

Putting Framework Into Action

Statewide Systems Partnering to Disseminate a Consistent Message

• Early Childhood and Part C

• School Districts, Special Education

• PNS Show Me Career Employment Grant State

• Division of Developmental Disability

• Special Health Care Needs

• Missouri Family to Family Health Info Center

Trajectory Towards Employment

Poverty

No opportunities

Sheltered Employment

Dependence on Govt

Education

Career

Job of Choice

Economic Sufficiency

$ for Home & Fun

Developed Youth Transition Packet

• Identified the Need to get information into the hands of self-advocates and families transitioning from High School

• Committee of people who have experience at Transition Age developing a draft packet

• Using LifeCourse network and Show Me Career group for further review and suggestions

Partnering in Communitieson Transitioning to Adulthood

Show Me Pilot Community organizations all recognized the impact of the scary letter from schools

Partnered with F2F to use Alternative to Guardianship materials

Getting the right materials into the hands of the people on the front line who could get them to families

Hosted Youth Leadership Academy and LifeCourse

Different Marketing Strategies

Materials focused less on “employment” and more on adult life outcomes

Included family members and other supporters to attend with you

Use LifeCourse Framework for Content

Adapted the tools and activities to be youth-focused, interactive and fun

Developed concrete “take home” tools with vision and plans

What’s next in Snohomish County and Washington??

Specific Next Steps and Recommendations

Level I: What changes are you going to make in your own life or job, based on what you heard today?

Level II: What are some specific organizational recommendations, for where you work or where you receive supports? (Please name organization)

Level III: What are some specific systems or policy recommendations that must occur to achieve a “Good Life” for all in Snohomish County or Washington?

Our Good Life

Life isn’t about how to survive the storm, but

how to dance in the rain.

-unknown

Questions, Reflections and Discussion

Contact Information

Sheli Reynoldsreynoldsmc@umkc.edu